Each month, we honor a special National Foundation for Ectodermal Dysplasias (NFED) volunteer. We chose this person based on input from our entire staff.
This month, we feature Jordan Kahn. Jordan is an avid advocate, and the state lead for Maryland. He has attended every Advocacy Day on Capitol Hill since 2018. His two daughters, Grace and Rose, are both affected by hypohidrotic ectodermal dysplasia (HED).
Our staff recently interviewed Jordan about his role with the NFED community.
What can you share about yourself, your family, and connection to the NFED?
My daughters are diagnosed with HED. Neither my wife nor I had an exposure to ectodermal dysplasia in our families, so we very much appreciate the support. My wife is from Japan and my kids attend Japanese school in Washington, D.C. We go to Japan as a family and love being able to raise them with that culture being on the other side of the world.
I have been the state lead for Maryland for Ensuring Lasting Smiles Act (ELSA) advocacy for several years. I first volunteered for Advocacy Day in 2018.
Why do you give your time to support the NFED?
My daughters have missing and conical teeth. I advocate so we can spend the money for their massive dental expenses on their college tuition instead.
Those with congenital anomalies are in the vast minority. Without taking action, we will be severely disadvantaged — such as having to pay large sums for medical conditions that should be covered by insurance.
When I explained to my 11-year-old why we are advocating, she said, “That’s not covered by insurance!?!?” Even a young person understands how wrong this situation is and that it needs to change. That is what we are trying to convey to our lawmakers.
It has been wonderful getting my daughters educated about the legislative process by advocating for ELSA and meeting like-minded families through the NFED.
What is a favorite volunteer event you have attended?
This most recent advocacy day was extra special because it was the first time my family got involved. We have lived in the D.C. area since 2011, but never got inside the Capitol before. My kids had a blast advocating and meeting others who have similar conditions. My family will keep advocating until ELSA gets passed. Then, we’ll find something else to advocate for!
I’ve been brought to tears during Advocacy Day, more than once.
What have you learned as a volunteer?
It feels satisfying to help an important cause, even though legislative change tends to happen very slowly — if at all — and after major setbacks. [Volunteering has] made me a better citizen by getting involved and a better father by involving my children to help better their future.
It’s great to be living in the D.C. area and able to involve my family in the democratic process on an issue so personal to us. But it has been challenging to see our dysfunctional legislative process up close. We had hoped ELSA would be passed by now, but will not give up hope.
Would you like to become an advocate like Jordan and his family? Register as an advocate today!
Thank you for your voice and participating.